XP

You’d think having XP would drive the mad boy off. “Xeroderma pigmentosum” is the official name, and it puts blankets over my windows and a UV suit in my closet.

Submitted: June 20, 2012

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Submitted: June 20, 2012

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I pushed. He pulled. This just wasn’t going to work.

You’d think having XP would drive the mad boy off. “Xeroderma pigmentosum” is the official name, and it puts blankets over my windows and a UV suit in my closet. It’s what made my parents move to
America. The moment my face hit the sun, my skin burned, my eyes clouded, and blisters oozed out. It was disgusting; it was me. My genetics.

Japan had little to offer in the way of treatment, so my parents packed up and headed for the land of opportunity. But the truth is, there is no cure. They might as well have stayed in Japan. No
matter where you go – Japan, America, the North Pole, if they have ‘em there – the doctors will say the same thing. Don’t go in the sun. I have never seen the sun. I am very, very pale.

But what’s so great about that great ball of fire? People always seem to claim they love the sun; love the feel of it on their cheeks, warming their hair and lighting their faces. But they can’t
even look at it in the eye. Not like I can look at my moon. The moon is the only heavenly body I have ever been allowed to look at, and from what I’ve seen it’s tons greater than that bright tyrant
of the skies. The sun will shine so bright you can’t even see the moon and stars. Like it’s got something to prove. The sun is nothing but a lousy braggart. Me, I’m more like the moon – even when
you can’t see me, I’m still there. I don’t try to take the light away from others.

“Haruko! Come out and play!”

This boy is retarded. It’s the only reasonable explanation I can come up with, because he knows I have XP yet he continues to scream at me from my window every day. When I try to tell my parents,
they simply chide me for using the term “retarded” – it’s an insult to those who actually are mentally challenged. They say Chander has no such excuse.

“Kaa-san, can you please remind Chander that it’s noon?” I whined to my mother.

I used to think the boy was teasing me when he asked me to come out in broad daylight. He knew I couldn’t do it unless I had a death wish, or worse. But he came by every day. I almost feel sorry
for the little punk. When we first met, he tried mercilessly to flirt with me. ‘Hello, I’m a thief, and I’m here to steal your heart.’ I could barely believe my ears when he muttered that cheesy
pickup line. I guess his parents later told him about my medical condition, because he seemed to give up his hope of having a Japanese girlfriend.

“Hey, Haruko!” My mother apparently let Chander in the house. Not exactly what I was aiming for.

“Hey… Chander.”

“You never want to come and hang out,” the boy pouted. It’s not like I’m playing favorites here.

“I don’t know if that even fits. And I’d never want to be seen in it. Now get out,” I pushed him through my door and hoped he’d make his way outside of my house. I guess my parents’
lectures on manners never rubbed off on me. They stopped when I commented that manners mean nothing when you’ve got no future.

After ascertaining that the neighborly pest was gone, I turned to my mirror. My hair was shiny and black. I have a pretty face, I think. I’m too thin. I ventured to my closet and pulled out my UV
suit. It was bulky and rubber-duck yellow. My parents would always buy me a new one every few years, but I’ve never used it. Better to spend my cold and lonely nights looking relatively normal than
to prowl about in the day looking like a freak show. Ah, how shallow girls my age can be. I know it but I don’t care. Too bad I won’t live to grow out of it. You couldn’t convince my parents of
that though, with the way they encourage me as if I didn’t already know more than anybody that my fate was sealed.

There are people with XP who live with only 30 years taken off their lifespan. I’ve always known I was sick, but only recently have I realized that I was dying. About half of all XP patients
develop neurological complications. One day I realized walking down the stairs was a bit more challenging than it should have been. Typing became a hassle. I was developing ataxia, which Google
told me was the scientifically correct word for “you can’t move right.” It’s a horrible feeling not to be able to control your body. One day I’ll need a wheelchair. But for now, it’s mild enough
that I can get away with not telling my family and saving myself a pointless trip to the doctor. I know he’ll only say the clock is ticking, but my parents will pretend they heard something else.

“Haruko, dinner’s ready,” came the voice of my mother. She looked aged beyond her years.

“Coming,” I acknowledged, as I made my way downstairs to the dining area.

Upon reaching the last step, I found myself in a spastic fit. I fell. I curled up and twitched pathetically, like a dying insect clinging to life. The fear was there, somewhere, but I felt
myself detached from the ordeal – I was an observer to my own life. My mother stood agape. My father rushed to me. It passed.

She gave me a pointed look. It pierced me. My father looked between the two of us and sat down for dinner.

When we finally left, my mother jittery and anxious, Chander watched us from his driveway. He must have heard the car. He offered a little wave and a thumbs up. What if I were dying? What does he
know? I do not understand this boy.

The hospital smelled sterile and dead. I loathed it. It made me feel dizzy and trapped. Dr. Thomas was nice enough, but no amount of sugar-coating would change the bleak truth of my predicament. He
seemed to accept this.

“What does that mean? Will she be okay?” came the urgent questions of my mother.

“Well,” he started, “Haruko here may need to use a wheelchair eventually. And she’ll occasionally have a spastic fit like the one that sent you over here. The problem is that the symptoms are
progressive.”

My mother swallowed hard and my father grasped her hand. My eyes were glassy, but I couldn’t tell you why. I already knew all of this.

“Will she… live?” my father choked out.

“I’ll be honest with you, Mr. Taiyou. Her time is limited.” Dr. Thomas looked meaningfully at me. Perhaps he didn’t think I understood.

We were back home before sunrise. Chander was waiting outside our door. My parents were silent. I was silent. I left the door open after I walked in and crept up to my room. Chander was bright
enough to invite himself in, and I heard his footsteps follow mine.

“I’m dying,” I stated simply. My voice betrayed no emotion but my stomach was knotted and I could feel moisture welling up in my eyes.

“You can’t.” An equally simple statement.

“I can’t? I’ve lived with XP for 16 years. I’ve watched my body fall apart. I’ve watched it move in ways I didn’t want it to. I’ve gotten wrinkles in skin that should be smooth; I’ve burned myself
by standing too close to my window in the afternoon.” I’m pretty sure Chander couldn’t understand a word I was saying after “fall apart.” There was a curious lump in my throat, and for some reason
the words I’ve been thinking for years manifested themselves in unpredictably painful ways when spoken - when made real. My cheeks were wet.

“You can’t die when you’ve never lived. Put on your suit,” Chander commanded. Sage-like wisdom – I could only contemplate whether he had memorized it off some random website or if he was actually
capable of mature thought. Regardless, I felt obliged to fulfill his request.

I slowly ambled to my closet and eyed my protective UV suit. It was apparently a good fit, because I slipped into it with relative ease. I felt miserable and ugly. But at least Chander was pleased.
I could see the corner of his lips pull into a smile.

“Now come outside. You’ll be able to see the sun.”

I was reckless and stupid to walk out in broad, deadly daylight without informing my parents. But this was something between Chander and me. Our little secret. Tears have a way of forming the
strangest of bonds between people.

The sun, I realize, is very much like Chander. It’s bright and persistent and ever-so-beautiful. It warms you to the core. I felt my prized hunk of rock, the moon, pale in comparison. The moon is
so pale, and yet the sun is always, always chasing it. It shares its light with it. It defines its faces. The two never touch, but wherever they come close, a vibrant array of colors springs forth.

I looked at Chander. I took off the head piece of my UV suit. I felt the sun on my cheeks, warming my hair and lighting my face. I kissed Chander. I felt myself burning. He held me. My skin
blistered and cracked. He kissed the top of my head. I lived. I died. A life’s worth of time was spent in his arms.